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Let’s Talk About Dying: Diary

If you’re still reading this (& the title hasn’t scared you), hello! It’s me. I’m not going anywhere soon (I don’t think, at least), but I think it’s important for me to have this conversation with myself, those I love, &, yes, people like you. Some of you reading this may be chronically ill; you might have a chronically ill child or relative. These things can be scary to talk about, but they don’t have to be. So, without further ado, here’s how I got super comfortable with how I want to die (if I have any say in it) & why it’s healthy for me to talk to myself & to those I love about my death.

Like so many other things that I’ve written on here, this was spawned by a late-night Twitter thread. I don’t get a lot of sleep; some nights I get no sleep – hence these rather morbid trains of thought that eventually get turned into something more coherent.

Even though I’ve been told many times by my doctor(s) & family members that Crohn’s Disease will affect my quality not quantity of life, there’s a large part of me that doesn’t believe them. It’s not melodrama – I promise. Yes! Technically, it’s extremely unlikely that my actual Crohn’s Disease will kill me. However – it is quite possible that I could get some sort of cancer from a medication that I’m now taking.

Why? Well, because medications that have been in the field for a while (when I say a while, I mean 10-15 years) have not worked for me. So…I have to resort to the latest & greatest of medications. On one hand, this could be amazing, yes! On the other hand…these medications have little to no research on a patient’s long-term health – even though they’ve been FDA-approved.

This isn’t me attacking “Big Pharma,” by the way. I get it! New medications need to be put out there, because older ones aren’t helping some patients – patients like me. I get that, & don’t try to fight it. But for me to say that these medications will do nothing but good things for me is, quite simply, unrealistic. There’s quite a high likelihood that some unknown & possibly detrimental side effect will pop up years from now. That’s a shame, but it’s also part of the game. We all know that medicine is a practice. That’s why doctors practice medicine. It’s an ongoing battle & there usually aren’t clear-cut answers or cures.

Okay. So, not only am I on medications that have little to no long-term research statistics, I am also on low-dose chemotherapy. Yes, it’s low-dose…but there’s no expiration date for me stopping my chemo. I could be taking this kind of chemo (or another) for years; perhaps, even, my whole life. The point of my chemo meds is to suppress my immune system just enough so that my body accepts the other meds I take meant to control my Crohn’s Disease (it’s complicated, I know).

So, basically, I have no idea what is going to happen to me in 10-20 years. To say otherwise would be kidding myself! I don’t mean that in a morbid way. It’s just the facts. & for me, personally, it’s more comforting to kind of think this information over…to talk to myself about how I would approach an earlier death. For example: I want a DNR.

What’s a DNR? It’s a do not resuscitate order; it’s a request not to have CPR if your heart stops or if you stop breathing. Unless you have a DNR on file, hospital staff will do everything they can to keep your heart beating or keep you breathing.

Well…not necessarily. I was of the above opinion for a while, too, until I listened to RadioLab’s (a great podcast series, try them out!) episode called “The Bitter End.”

In this episode, according to RadioLab’s summary: “Producer Sean Cole introduces us to Joseph Gallo, a doctor and professor at Johns Hopkins University who discovered something striking about what doctors were not willing to do to save their own lives. As part of the decades-long Johns Hopkins Precursors Study, Gallo found himself asking the study’s aging doctor-subjects questions about death. Their answers, it turns out, don’t sync up with the answers most of us give.”

Basically – because of what doctors have seen in their careers of attempts to resuscitate patients, they donot want this experience for themselves or for their family. In fact – most are so adamant about this that a study was conducted by Johns Hopkins Hospital, called The Precursor Study. All the subjects were doctors, & all were asked about what forms of care they’d choose should they suddenly fall ill, or what they’d choose at an older age.

I don’t always trust doctors (for a variety of reasons due to my chronic illness) but I have to say I believe them on this one. I’ve seen people on ventilators, in palliative care, both in real life & on screen. Neither is a pretty sight. I don’t know what I’d do if it was a relative of mine, but I think if it was me, I’d go for a DNR.

This isn’t an easy topic to think or talk about – especially not when you’re a younger person. But if you’re a younger person with a chronic illness (especially a serious one), it might be worth your while to discuss which treatments you want – & which ones you don’t.

Remember – if you’re over 18, your parents can advise you in treatment…but they cannot choose your treatment for you. You’re a legal adult at 18. That means that you’re the one choosing to walk in for an infusion, you’re the one filling your prescription/signing off on it, you’re the one consenting to a surgery & risks of anesthesia, you’re the one making the decisions about your life because it is your life, plain & simple.

No one really knows what they want with their life, right? It’s constantly evolving & changing. But there are some things I know I’ll never want. I want to tell my parents & ICEs that. I want to make sure that should something terrible happen to me unexpectedly, I’ll get the treatment – or non treatment – that I want & deserve, as a human being, as someone who owns their life.

For me, thinking about & discussing this topic isn’t frightening or overwhelming. It gives me a sense of calm; a sense of control. It reminds me that even in this frightening, overwhelming world where I was given an illness that I didn’t ask for, I have the controls at the end of the day. I hold them in my lap. & I will do everything I can to make my end the best one possible.